Cold Caps Users Past and Present, to Save Hair
Comments
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My shedding got bad after 5 weeks PFC. I just started doing normal hair care about a month ago. I still only wash 2-3 times a week because my hair does not really get greasy at all. It seems pretty dry...I am looking for some new chemical free hair care products that may help add moisture to it. As far as what to expect from shedding - so many people react so differently so I don't know what to tell you. I shedded bad for 5 mo's and of the hair I lost, a lot of it was PFC. I hope your shedding has stopped at 5 weeks! That would be great!
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Maria- your hair looks perfect.! I will be 19 weeks PFC this friday. My hair is thin but I am happy that I have hair. Like you, my hair on the back is growing curly, on the sides by my ears it normal. I have about 3-4 inches long.
Tiki0 -
So I just came back from Herceptin #9 - 1/2 way finished!!!! YAY!!!
Anyhow, I tried to talk to everyone about the cold caps and they totally shrugged me off and completely ignored me. Both the volunteers and the nursing staff! Why do they respond like that when they are sitting in their chairs wearing wigs and I'm finished with chemo and have hair. I'm going to try again at my next appointment to stress this to the oncologist, although, I'm probably changing oncos and facilities.
I don't get why everyone wouldn't want to hear more!
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Arlene: that is terrible! I think unless you are faced with the devastation of potential hair loss, maybe you don't get it? Honestly I can't imagine how painful it would be waiting for hair to grow as opposed to waiting to color my hair again. When I look at my thinner hair and feel less pretty than before, I take a deep breath and know that this could be so much worse!!!!!
This Thursday I will be six weeks post pcc. So far I am not shedding much. Maybe ten to 15 hairs in the shower. I am washing two to three times per week with Pure Design Shampoo and adding a drop of apple cider vinegar. I condition daily with Paul Mitchel Keratin and use Ojon leavin conditioner and Aveda be curly and just let the hair air dry. I wear cute hats when I go out and will call my colorist in two weeks. I am a double processed blond and the color can be harsh so I am waiting. In two weeks I will use the Sea Chi Hair Growth Conditioner all over my hair, including roots! I will let you guys know if it works! I don't want to assume the shedding is over because, it might not be!!!! I have most of my eyebrows and my lashes are thin. I am using latisse on both.
My hair loss is mostly on my left side by my ear. I can notice. My ear sticks out! My hair was not thick before chemo but had a good amount. I have clip in-extensions to add volume and style to my hair, but my main priority is conditioning my hair. I ordered more products through Ojon. All of their products are natural and made for dry hair.
I am so grateful for the caps and this thread! I am running again and physically healing fast. This is because having my hair made me feel normal. I never looked sick and never became sick. To be honest I never took anti nausea pill through out chemo. The doctors would change their minds about the caps if they compared us to the average woman in treatment!
Arlene: if you keep at it, the word will get out there and one less woman will have to lose her hair! That is the important thing. I tell everyone in the medical field that I encounter, hoping the information will reach the right people .
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I agree Soccergirl! I also needed no pain meds and exercised daily through chemo for an hour. I never looked sick or acted sick. I do think looking better does a lot for one's mind. My new med onc here in Chicago never asked why I had hair eventhough he knew I finished chemo in May. My hair is down to the middle of my back....it definately doesn't look like a wig. I guess they are only into treating the cancer and not the person as a whole. That's unfortunate.
I did visit the cancer wellness center here last week and took a yoga class. The wellness director and ladies at the desk were asking all kinds of questions. I told them about cold caps. They didn't even know anything about them. I asked her if she wanted brochures because I would contact the company and get them sent there. She said she would have to ask if that was permitted since they were not FDA approved....blah, blah, blah.... I am going to ask again to see what she found out.
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Doctors need to treat patients and not tumors! I have started meditating and doing yoga regularly since chemo and I think these two factors are huge! Before cancer I played competitive soccer and other sports. I never did anything that was not high impact. I really believe my practice has helped me in two areas. First I spend one hour a day in mediation and the focus of healing is my hair and my ovaries. I have not experienced hot flashes or night sweats. My shedding is much better. I believe truly in the mind body connection and love yoga, not power yoga. This change in my life has been very positive. I hope i don't sound crazy, but the mind can heal the body. Would I have ever gone to yoga class in a wig? No.
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I agree with you Soccer....I too always did high impact cardio activities. I am trying to do yoga once a week now. I miss the rush of the cardio but the calmness and the mind part of it feel really good too. I am the only women at the cancer center yoga class that is not a blue-hair. It looks more like a senior citizen center but the class is a good place for me to start until I feel comfortable enough to go to a regular yoga class at my health club. The instructors have been fabulous! The one the other day brought his guitar and actually played relaxation music live during the relaxation/visualization part at the end of the class. The workout is not physically hard for me, but I don't feel ready to go into a regular class and explain my limitations. I am going to try to keep going once a week.
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Hey all~
CBS news just had a spot about how Johnson & Johnson Baby Shampoo has ingredients in it that can cause cancer. The real kicker is this is the shampoo that we were told to use when I first started the Penguin Cold Cap regime. It was supposed to be mild. About halfway through they had me switch to an all natural one.
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I switched from J&J products when I realized it was full of crap last year. I use to work for J&J and had tons of their stuff as I could buy it at cost. It nauseates me to think I was using that on my son as a baby and for the first few years of his life. How can it be a "gentle baby product" that has cancer causing agents? Sickening......
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Maria I do a yin and yang yoga (therapeutic) which is designed to balance the hormones and detox the body. The class is amazing. Running depletes yin (estrogen) so I balance it with this class. Certain types of yoga and mediation restore yin. Chemo is killer on our reproductive system and I make time each day restore my estrogen. I wish I had found yoga years ago and wonder if I knew how to calm my mind and body could I have avoided this disease. The type of exercise I did prior to BC only released high levels of cortisol in my blood. I am a highly anxious person so I lived with high levels of stress hormones in my body for years! I think this fueled my cancer.
ANG- I am not surprised. I read through so many labels of products that I have and so many had parabens. I was using mederma on my scar where I had my lumpectomy and there are parabens in the product. I was putting the product on where I had cancer. That was it! I got on the phone with so many companies, complained and demanded my money back! I have checks in the mail every day.
On another note I could not sleep last night because of the World News Segment on alcohol and breast cancer. I have read that if you eat a high sugar, white flour , western diet, it will increase your risk. If you eat a Mediterranean diet with low sugar, small amounts of alcohol do not increase your risk. Americans have the worst diet and our animal products contain hormones. I got my period when I was 11 and I was raised on meat and potatoes. Girls now get their period at 9 or 10. It is scary to think of how toxic the environment is!
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Soccergirl: can you elaborate on the yin thing? I am hormone positive so why would I want more estrogen? I am not sure I understand..any information or resources talking about this would be great. As far as the alcohol risk - I heard it on the National News last night and they said that an average woman's risk of BC is about 10% and with more alcohol it increases THAT risk 15% which takes a woman's risk of BC up to about 12%. They said everything in moderation is fine. They also indicated the study design was not really that credible. The participants were given a questionairre to complete AFTER to determine their health habits. They were not completing a daily diary or recording information as they went...they were going off memory which is not very accurate. Just keep these things in mind as you review that study. I am trying not to freak out. I have reduced my wine intake significantly and now only have a glass on the weekend or when we are out to dinner. That is very moderate.
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Ladies: I'm a health nut and very cautious about things but I'm of the opinion that just about everything gives us something. If we continue to worry about all these elements that might cause or increase or chances of this or that, we'll drive ourselves nuts and that is not good. I work out and am back to jogging again, eat right and healthy and try to avoid toxins as much as possible but I've decided I need to try to relax a bit and enjoy life as best I can.
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Mdg: My views of preventing cancer for the future might be a little radical. I had a lumpectomy, chemo, herceptin and now doing radiation. I am in my thirties and just married. I want the option to have a family later down the road. I am estrogen positive too. However, I want my cycle to come back and have been researching eastern practices for cancer and disease prevention. I feel like I did the western medicine part but now I am looking at practicing ayurveda (eastern medicine) to balance my hormones (yin and yang) and maintain optimal health. I gave up plastic, now eating organic food and using products that don't bind with estrogen. The philosophy behind the practice looks at ideal health as a balance between sex hormones and stress hormones and if the two are in sink, then the disease(cancer) does not have a suitable environment to grow. I am exploring this belief and yoga is huge in India. India has one of the the lowest cancer rates in the world. The diet, spices and spiritual practices have received a lot recognition for disease prevention. I hate the idea of long term medication and hope their will be more research on and statistics to examine natural ways for cancer prevention. So, I guess I want yin so that I have my period and feel more like me. I don't want to much yin. I want the perfect balance for my yin and yang. I probably sound little out there.
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Arlene that is a great perspective! I did not sleep last night and feel worn out today. Thank God I am noy working while going through treatment.
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hi gals! I'm looking for some more info on dignicaps and the other cooling system that's out there. I'd like to push my local hospital to do something, but i think the mechanical systems are the future of cooling. They watched me do cold caps and realize how much work it is. I think simplifying things might get them on board to do something permanent.
Maria - i've logged on to your website! Great info there. If you have any success in finding other products to recommend, can you add those too? I've found many sites that tell me what to avoid - but i want a site that tells me the best products to use. I'm 43 - so i'm looking for the anti aging creams! i plan on sticking around til I'm 90, so i better look good!! :>) Makeup, lotions, etc. What's out there and what really works?????
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LivCar, I don't know anything about the other cold cap systems out there, but Frank (Penguin Cold Caps) told me that he is working on a cap that will run on batteries. Wouldn't that be great if he gets that going?
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Livcar: The cincovidas website has been helpful to me. I wish they would highlight safe products. So far for face washing and body soap I am using Neutragena Naturals line. I have not found an anti aging cream yet but am looking into the Dr Hauschka's line of make up to see if that is OK to use:
I did find Tarte Mascara which is OK. I have been using some Tarte products for make up but am going to replace them as they do have less bad stuff in them but still have some bad things that I realized after I bought them. For hand soap - I use Trader Joe's liquid hand soap in a pump bottle. That is pretty chemical free. For body lotion - Alba brand which is available even at Walmart. For deodorant - Nature's Gate. That is all I have so far.
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I use 100%pure makeup. I like it although it is pricey. They have their own website.
Also use the Healing Hand hand cream. Not too greasy. Found on Amazon.
I second the Trader Joe's liquid soap in a pump bottle.
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Tiki
I have noticed more body hair too and it's growing in thicker and darker. My underarm hair on the non cancer side is so thick and strong I can barely get it shaved off well.
I have not started taking Tamoxifen yet, I know, I know, the docs tell me to, but I'm resisting.
I thin it's the chemo and/or Herceptin.
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I am interested in using Klorane GentlyDry Shampoo with ingredients: Oryza Sativa (Rice) Starch (Oryza Sativa), Starch (Oryza Sativa), Aluminum Starch Octenylsuccinate, Hectorite, Avena Sativa (Oat) Kernel Flour (Oat), Kaolin, Silica, Cyclodextrin, Fragrance (Parfum) (Parfum)? Itsounds like itcould be a safe product to use during PCC therapy. Would like your comments.
Also those temporary hair coloring products that you can brush on like mascara or apply like a crayon... though the ingredients may not be great, couldnt they be safe to use during PCC therapy to cover the gray, if you apply it 1/2 inch or so away from the roots/scalp?
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Please tell me : what does PFC mean? THanks.
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PFC is post final chemo. I did use Colormark for my roots during chemo. I got it at a beauty supply store. It's not the best but it does help cover things up. I am not sure about that shampoo you mentioned. It looks to be pretty chemical free but you may want to ask the folks at PCC's for advice.
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rik: the ingredients in the dry shampoo sound fine. I've a couple of questions about how it's used, though. Do you sprinkle it on and then brush it out? I'm concerned that the combing (remember, no brushing) required to remove the dry shampoo might be too much agitation for your hair to handle. The hair is trying desperately to hang on and the less you comb/pull/arrange etc. it, the less you'll shed.
Please don't forego the weekly mild shampoo-and-water hairwash. It's important to keep the scalp clean, not just the hair strands. All that chemo is detoxing through your organs and through your largest organ, your skin. Constant flushing by drinking water is essential, but to close the loop you also have to wash your skin and scalp.
Cheers,
Susan
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If you can wear a soft loose hat during PCC whyisnt it OK to wear a wig that is not tight or binding, which does exist.
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Wearing a wig is fine. I did it - and many others did too. I went as long as I could with my own hair which was until the 6th of 8 treatments, then i wore my wig and still am. I put a mesh netting on my hair to hold it down and to prevent any pulling from the wig. It improved my confidence and made me worry less about hair falling. I always knew I had a back up plan. I still wear it now, 3 months PFC. My hair is thin, grey and ratty looking. I'm thrilled it's there,and it's fine for at home. But when i go out, I like to look like the old me.
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Michcon- probably is chemo what is causing hair grow. I had Herceptin for a year in 2009 and I never had hair problems on my face, well is all over my body that I have notice more hair than usual. And I started Tamoxifen in aug 2010, and stop during chemo from April- June 2011, and I am back on Tamoxifen again since July 2011. So for 8 months that I took Tamoxifen until I started chemo never notice hair grow. Evething started more or less 2 months after I finished chemo, at the beginin I was happy to see the hair coming back but latter I notice it was too much that I had to wax my temples on my face and arms. Years ago I had underarms and bikini line laser on those areas I am fine. Anyways I haven't seen hair growing back on the wax area and its been about a month.
Update- I am 19 weeks Past full chemo- I'm still washing my hair twice a week. Cold water, but really not that cold, I am in FL. and water in never too cold. Blow drying my bangs on warm setting, rest with cold. Always using curling iron on low setting everyday. Covering my grays once a month with clairol no anmonia, no peroxide. I have a of lot hair growing, I am using hair extension for fullness since I lost hair around ear and nape of the neck, the hair on that area is about 3-4 inches.
Tiki0 -
I am six and 1/2 weeks post pcc. My shedding is much better and I switched to warm water. It is freezing in Boston and can only rinse for a short time in the cold.
I have a friend that is a hair dresser that comes to my house to trim ever three weeks. My hair has grown a lot since I started chemo. I am only having the ends trimmed about 1/4 of an inch each time. He says hair is very stable at the roots and thinks the shedding is from the length not the roots. I wear one tiny clip in extension on the left side of my ear hair where I notice the hair loss. I hate the way the extensions feel on my scalp. I blow dry my bangs and flat iron them now and air dry the rest of my hair.
Conditioning my hair is my priority. How is the condition of other people's hair after chemo? My hair feels healthier each day but it is still dry. Does the hair bounce back? I am using more products now.
I still have brows and some lashes. I use latisse on both. I think the lashes might go soon. I am prepared.
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Hi everyone,
I am now almost 4 months PFC and shedding has slowed considerably. Other than having about 4" of blackish grey roots people would not know I had chemo. If I show them my sideburns where the cap apparently did not touch and they see the very short 1/2" hair, then they can really compare. I am planning to attend a very large all day Breast cancer conference tomorrow and wear a T shirt that says "I saved my hair during chemo, Ask me how" We need to do some serious education here in USA.
I saw my colorist today whom I hadn' seen in 8 months. He gave me a hug and said hair looked great. He thought that semi permanent color might work to cover up the grey but it has a little ammonia. What are people using to cover up serious greyish dark brown roots? Mine are about 4"-'5" long? Is everyone waiting 6 months before they color the hair? My scalp still itches at times and is very dry, so I worry about doing anything- am still washing my hair in cold water 2x/week. Advice needed. Thanks
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For those women looking to clean out their shelves of products with chemicals that may cause cancer, Stacy at Greenline Beauty only carries products that are completely natural. She has really done her research and will tell you which products you use are "clean" or partially "clean." She even told me that the Yes to Carrots brand I picked up at a Rite Aid was pretty clean but still had an artificial fragrance in it. A lot of products make ambiguous claims in their advertising. It is kind of disturbing that my chemo center gave away free bottles of a skin wash containing parabens and that the Look Good Feel Good program gives cosmetics with controversial ingredients! The all natural products are not more expensive than department store brands. But hey, I would rather spend money on my body and health than anything else right now. http://www.greenlinebeauty.com
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Jane Iredale is a complete line of natural make up. Based in minerals. I had a demo the other day. I can't afford to replace all my make up at once (and don't wear it enough to make it a priority), but I am going to check it out when I have an occasion to wear it.
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